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Happy Holiday 2014

I was at the City of Hope last Monday and as I was looking at people without hair, wearing masks, and looking weak, I recalled when I was in their shape.  I’d look at people in the state that I am in now and I remember that I didn’t even dream of getting to this condition.  Just living day to day was an accomplishment.  I’m almost 1.5 yrs post transplant now and in general I feel good.  I don’t have any significant GVHD symptoms to speak of, thank heavens!  I wouldn’t mind having a little more energy and clarity of thought but who doesn’t want that.  My blood test looked OK.  My next mile stone is the Holly Grail of 2 years, July 6, 2014.

2 years is a big milestone in the transplant world.  I’m not exactly sure how that came to be but it is.  It includes the competency of the immune system, physical well being, problems of GVHD, medications, and prognosis of survivorship from many of the leukemias and lymphomas.

While I was at the COH, I finished my training to be a volunteer for “Be the Match” which means I can be involved with donor recruitment drives.  I hope to help organize one in Santa Cruz.  Also, our local post transplant support group in Santa Cruz is growing.  A couple weeks ago, 4 of us got together to share our experiences, thoughts, challenges, and aspirations.  I just found out a couple days ago about 2 new Santa Cruzians that are currently getting their transplants at Stanford.  There is no doubt in my mind that it is just a matter of time till we have a critical mass of post transplant people.

Please put April 28th 2014 on your calenders.  I am going to be giving a talk on bone marrow transplants at the Dominican Hospital Katz Cancer Center.  Free and open to the public.  I’d love to see and say hi to all of you.

By the way, I became a grand dad on 12/9/13 to Arielle Mara Engelman 6 lbs 3 oz 19.5 inches.  She came out pink and crying with 2 arms and 2 legs.  Yea!!! Claire and I just returned from Indianapolis where we spent 5 glorious days visiting them.  As you can imagine, it was an incrediable experience for me.

Arielle Mara Engelman  4 days old

Arielle Mara Engelman
4 days old

Best wishes for a happy and healthy holiday season to everyone!

Almost Thanksgiving 2013

Claire and I went to Cleveland in early November for a GvHD (Graft vs Host Disease) meeting and then we drove to Indianapolis to visit our oldest son Sam and his wife Meg.  The meeting was fantastic!  I went to the physician’s track and Claire went to the caregiver’s track.  At lunch, everybody got together for a panel question and answer.  For me, the talks were research and basic science centered with clinical applications.  They included professors and doctors from the NIH, John Hopkins, Seattle Cancer Center, and Cleveland Clinic.  Very high-end.  I know this is going to sound weird but I was spell-bound, it was so exciting.  The progress in understanding and treating GvHD is increasing at a logarithmic pace.  I feel so fortunate to be involved with an endeavor that has limitless opportunity for learning and intellectual enrichment.  I love learning new things, it’s a blast!

My efforts to start a BMT support group is progressing but slowly.  None the less, tomorrow night I’m going to meet with 4 other local allogeneic transplant recipients and brainstorm a bit.  In April, I’m giving a talk open to the public on bone marrow transplantation which will include my perspective as a physician and patient at the Dominican’s Katz’s Cancer Center.  The most frustrating thing is trying to find out who in Santa Cruz is a BMT recipient.  The privacy laws make it very difficult to get that information.  If anyone has ideas on how to find and reah out to people, let me know.

So we left Cleveland and drove to Indianapolis.  The change of colors was spectacular.  A feast for the eyes!  Visiting Sam was sweet but not long enough.  Our grandchild, ( sex to be learned the old fashioned way) is due to make his/her entrance in the end of December.  Our daughter Naomi is working in SF and thrives on city life and Joe, our younger son, is pushing his limits in bicycle jumping and acrobatics.  I like the adrenaline rush aspect of the sport but not the potential for crashing.

I’m playing my flute daily and doing fall home and garden maintenance.  I feel good.  I don’t take this good fortune for granted and every night I achnowledge it.  It’s still unclear if and when I’ll be able to go back to work.  Possibly next summer or fall but the hitch will be in finding an appropriate part time position locally.  As I’ve learned from my transplant experience; be patient, be fearless, be open and …

Best wishes to everyone

Jim

Chronic BMT, 1 year 3+months

Its been a while since I last wrote and lots of things are happening.  I’m in progress for developing  a BMT survival and support group locally.  I’ve talked to a variety of people and organizations consisting of hospital administrators, national organization, healthcare providers, and fellow patients.  It is easy to get overwhelmed by the scope of such a project in that there are so many different needs and ways to go.  The devil is in the details and the details are huge so it’s potentially easy for me to spin my wheels and not get anywhere.

So, here are some of my thoughts.  I want to interact directly with fellow transplant patients, locally.  We have our own idiosyncratic needs that distinguish us from solid organ cancer patients like breast, colon, and prostate.  There are overlaps but there are also differences such as GVHD, graft vs host disease.  In a way, I feel that I’ve been given a gift, a chance to pursue a new endeavor.  Not that what I’ve done up to now has been that bad but I don’t think I’d have taken on some of the emotional, psychological, and spiritual challenges without this occurrence.  In talking to fellow transplant recipients, there is a need for an interactive support group.  The Katz Cancer Center at Dominican Hospital has offered to be the physical site and I met with the medical CEO at Dominican Hospital who was excited by the prospect and supportive of this venture.  I’d like to do a local face to face group as opposed to an internet or phone group.  I’m still trying to find out how many of us are in the area so I’m reaching out to the local oncologist and to Stanford which is the regional BMT center.  Trying to find out who is a BMT recipient is difficult due to the privacy laws but I’m making progress.  I’m also interested in the post transplant medical needs of patients and will be attending an all day conference in November near Cleveland about GVHD and I plan on going to a 4 day meeting this February in Texas.  It’s the annual international BMT Tandem Meeting which is for transplant physicians and researchers and looks at all the scientific and medical aspects of Bone Marrow Transplant.  For me, this is very exciting to be with the international mover and shakers of the transplant world.

The financial needs of BMT patients are also an issue.  I had time to financially prepare but many people don’t have this luxury.  Developing fund raising events in Santa Cruz for patients in Santa Cruz could help.  A fellow BMT patient was the commodore for the Santa Cruz Yacht Club and there could be the future possibility of having a regata fund raiser.

Although I feel good and have more energy every day, I’m still on immune suppressants and need to be careful.  I’m gardening, playing my flute, and trying to keep up on the medical literature.  Over the last month, I’ve been volunteering at the local free clinic seeing non infectious people which has been fun.  I was a little insecure about my medical competency since I had not seen any patients in over a 1 1/2 years but it’s coming back.  There is truth in the adage “Use it or lose it”.  With the flu season approaching, I’ll have to stop going to the free clinic pretty soon.

I feel very blessed.  I’m thankful in that we’re having our first grandchild in late December and it looks like I’m going to be around.

Post 1 year

A new phase has begun.  It’s both a return to “normalcy” and a new beginning.  I’ve graduated from living life on a day to day basis and now I’m dealing with all its long term challenges.  But I have a different outlook, a different attitude than I did before the transplant.  I’ve changed.  I have existential questions that sound like cliches from the 1960s such as what is the meaning of my life?, what path do I want my life to go?, how can I reach my soul’s potential, how can I give back, etc…  It has been a slow vague visceral progression over the last 2 months without clarity but it became acutely crystalized and was brought to my awareness, by a dramatic incident about 2 weeks ago.

I went to an annual chamber music workshop in Arcata 3 weeks ago.  I’ve done this yearly for about 9 years except for last year where I spent July at the COH.  It’s a wonderful experience of playing music and spending time with friends.  This year was extra special.  A dear friend introduced me to a women, Carolyn, about 9 months ago who also received a bone marrow transplant.  We’ve only communicated by email but we finally met each other 2 weeks ago.  It was very moving and intense.  During the course of the evening, I had an explosion of thoughts and feelings.  Since then, I’ve had a couple other encounters via telephone, personal interactions, and books that have reinforced and accelerated this process.

There is a lot of information and support for pre transplant,  hospitalization, and immediate post transplant life.  But there is much less support and information concerning chronic post transplant life challenges.  The last couple of days, I’ve begun to explore this subject for both my own personal needs and also because I know there are lots of people who like myself are also dealing with this issue.  I want to get involved with post transplant psychological and emotional support groups.  This afternoon I talked to another post transplant person and we talked about exploring the idea of spear heading a regional bay area conference with “experts” and transplant patients and their families regarding medical, psychological, nutritional, and emotional challenges.

I’ve contacted COH and have looked at some internet sites and have talked to the Dominican’s Cancer Center.  I believe the need is there but like so many things, the devil’s in the details.  I need to find out exactly what is needed and what already exist and what I can do.  One step at a time.  I’m open to returning to a medical practice part time in the future but I’m still a year away from that.  I’ll have to wait and see what opportunities will present themselves to me.  There are a lot of unknowns that I need to contend with but I know if I can transcend all the fears, things will work out.

The immediate future holds exciting promises for me.  In addition, I’m going to be a grand father in late December.

1 year, it’s my birthday

July 6, 1 year ago, was when I received my brother’s stem cells.  The old cliche, “doesn’t time fly” is all so true.  So I’m celebrating my other birthday with a toast to my good fortune, to life, and to all my other transplant kin that I think about daily.  1 year is a big milestone and I think I’ve come through this with a minimum of GVH or any other significant problems.  Of course, I’ve eliminated a lot of the bad stuff from my memory.  I’ll spend the next year getting vaccines, tapering my immune suppressant medications, and hopefully developing a competent immune system.

I feel pretty good except for a slight blip that has nothing to do with the transplant.  I fell from my ladder and broke 2 ribs about 9 days ago.  It’s only pain, no long term problems.  My energy is good and I’m looking forward to some traveling, being a grandparent, and enjoying life.

 

Almost 1 year

We just finished our 4 week road trip.  After spending a glorious week in Chicago, we proceeded to Avon near Indianapolis to see our newly wedded son and his wife.  During dinner, we found out that we’re to be grandparents.

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Sam and Meg standing in front of the entrance to Cook Medical Supply in Bloomington IN where he works.  After a wonderful visit with them we spent the rest of the time meandering back home.  First to Galena, a mid 1850 town on the Mississippi.

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This is the original painting of Lee surrendering to Grant that we all saw in junior high school.  I’m surrendering to Claire.  Then we went to Badlands South Dakota

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due to the unusually high rainfall, there was lots of green.  We then drove to Mt Rushmore.  Up close and personal, this monument is really something to behold.

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About an hour away is Devil’s Tower, truly a close encounter.

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It took a day to drive to Yellowstone across the plains on Hwy 90.  Due to the unusually wet spring, everything was a deep, rich, beautiful lush green and it seemed like we could see forever.  Being so flat and clear, our vista reached to the end of the horizon.  The prairie grasses were about 2 feet tall with ends of golden brown tassels that wiped in the wind.  The sunlight shimmered reflecting hues of greens and golds.  It was a living breathing Van Gough “Wheat Field” to the nth degree.  I was so present, so there, so transfixed in the moment.  I loved it.

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Yellowstone is great with all the wildlife, waterfalls, and Old Faithful but full of people.

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But there are a variety of hot springs and geysers

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Then to the Grand Tetons.  We did a 6 hour high alpine hike about 9,000 feet high which was amazing.

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That is a place I’m going back to.

Then to Crater of the Moon in Southern Idaho.  It’s a volcanic lava flow like Kilauea Hawaii with very cool caves.

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I’m feeling good and looking forward to July 6, my 1 year transplant aniversary.  I count my blessings nightly

Almost 11 months, time flies

I’m happy to say I feel good and that my energy and endurance are picking up.  My pill box isn’t nearly as full as it was and I’m tapering off my Sirolimus, one of the immune suppressant meds.  This process is very slow, decreasing 1 pill every 2 months.  After the Sirolimus is the Tacrolimus.

So, we decided to take a road trip.  A photo perspective.

Driving Hwy 80 in Nevada

Driving on Hwy 80 through the salt flats of Utah

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Flaming Gorge between Utah and Wyoming

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“Sue” the largest T Rex in the world at the Field Natural History Museum in Chicago

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The largest Tiffany stain glass dome.  The Chicago Cultural Center

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Architectural River Tour on the Chicago river.  Chicago is an amazing city.

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Greetings from Chicago.  More to see and do in Chicago before moving on to visit our son Sam and his new bride outside Indianapolis. Then we return home meandering through Badlands, Yellowstone, Grand Tetons, and Crater of the Moon.  I feel very blessed